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Wednesday, September 1, 2010

Our World Upsidedown

I never thought we'd be spending part of our vacation with Laura in the hospital. She was diagnosed with a murmur on Friday and had an echo yesterday. Today we're at Riley and after another echo and visit with the doctor, she's been admitted for a few days with several serious heart issues.

1) She has 2 VSD's (holes in her heart). One is minor, the other quite large. The large one will require heart surgery in a few weeks or months. This condition is putting pressure on her lungs and so she's receiving meds to help with this.

2) She has cardiac myopathy which means her left ventricle is enlarged and not formed the way it should be. She is in the hospital partly to try to figure out what caused it (genetic testing and metabolic testing).

Fortunately, although these are very serious issues, we are still expecting that she might be able to live a fairly normal life. We are SO thankful for that news.

However, there are still far too many unknowns. I know it's going to be hard to live life normally when I'll be waiting for the next test, the next appointment.

Anyway, we are here at the hospital for the next two or three days. Everyone is helping with the kids and meals at home and we are thankful for everyone's prayers.

There is much to be thankful for: being in a city with such an amazing children's hospital and cardiac pediatricians, lots of family and friends to help, and time of off work for Michael.

30 comments:

You, Laura, Michael and the rest of the family are in my prayers. I can only imagine the anxiety of all of this. God's grace and peace be upon you and most of all His wisdom for you and Michael as you make the decisions that are put before you.

What a Blessing it is to know so many people are gathering together in prayer for little Laura and her family... we are standing together to see the glory of God... and His handywork... thank you everyone.. God Bless you...

I just had the picture in my mind of the day I ran into you and Laura at the hospital when she had different tests being run. You had such a peace that day. A peace that only God can give. I 'hear' that peace in your words tonight and pray that God will continue to wrap you and your family and especially your precious Laura in His perfect peace. We will be praying!!

Heather - Thanks for blogging to keep everybody updated. I assume someone may have told you (or you may already know) but Lew & Linda Owens' daughter Heather had a similar surgery at a very young age at Riley. The doctors there are so great! We'll keep all of you in our prayers.

Oh Heather - thank you for letting us know - we will be praying for you and for Laura especially. I know what it is like to live with the uncertainty and anxiety, but God will give you peace as I'm sure He is already. Thinking of you so much at this time.

Heather, I have never visited your blog before but did so at the recommendation of Brenda (Coffee, Tea, Books, and Me). I thought that I would share a story with you. 10 years ago, a couple who are dear friends of ours came to our town (Gainesville which has a large university hospital)in order to have their newborn evaluated for heart issues. They were just considering adopting this baby boy and it was a huge decision. Naturally, they were devasted by the medical news, but decided to go ahead and step out in faith. We met them at the hospital and prayed with them. The baby underwent heart surgery at that time and other surgeries since and has done very well. This past weekend, they returned to our area for a church re-union(he had been our pastor in the late 70's) and they had their son with them. He has done amazingly well and has no developmental problems at all. They have been very blessed. All of us live one day at a time with our children and with trusting the Father. I pray that you will find the peace to do this. One day, you will be able to share your story and encourage others walking this same path. God's Blessings to your family!

Oh Heather...I just found out about this. When Todd and I heard we stopped right then to pray for Laura and each one of you. We will continue to lift her up in prayer. Praise God for wonderful physicians who are looking after her so carefully. You must be exhausted. I will pray for strength for you, too. I can only imagine. Please, please keep us posted. Love you.

Heather, I am back from my trip and quickly looked to see if there was an update on your blog. I am so shocked and so sorry to hear such news. I know you feel bewildered right now, but your right to be so very thankful for having such a wonderful hospital to care for Laura! She is in such great hands! I have and will continue to pray for you and the family. Please let me know if I can help in ANY way! Love to you and yours - StephanieK

I found your post through Christina Wall's blog. My youngest son, now 5, was diagnosed with a murmur two days after he was born and then diagnosed with Tetralogy of Fallot the next day. He had a whole between the two bottom chambers of the heart, a narrow pulmonary artery and malformed corresponding valve, deviated aorta and a tendency for an enlarged ventricle. He had surgery at 6 months and later a stent put in as well. He is doing very well and has no restrictions or sequels from his problem other than a fairly long scar on his chest and the need for an artificial valve sometime in the future, probably late teens. He does need cardiology check ups yearly.I know what you are going through. My son was at the Peyton Manning Children's Hospital and everyone was wonderful there as well.If you have any questions or just need to talk please feel free to contact me. It's so anguishing, the wait and knowing that open heart surgery will be needed. I really hope everything will turn out well, as I believe it will. Although we've never met, I'm sending you hugs and lots of hope.Silvia